Left in the waiting room: a digital intervention pilot for siblings of children with special needs

Shannon Scratch

Alex Elkader

Impact

  • The study helped the researchers develop a new program called iSibworkS-Jr and iSibworkS-teen, which aimed at supporting teenage siblings of children with disabilities and/or special needs aged 6-7 and 12-16, respectively.

  • The involvement and integration of participants and parents in the workshops through activities in the workshops lead to meaningful positive changes.

  • The iSibworkS instructional manual is developed to promote quality service of session delivery and maintain consistency across all group facilitators when delivering the program.

  • The study helped the researchers adapt the original intervention for younger children (iSibworkS-Jr; 6-7 years) and teens (iSibworkS-Teen; 13-16 years) which aims to support siblings of children with disabilities.

  • The involvement and integration of participants and parents in activities throughout the intervention adaptation led to meaningful changes.

  • The development of iSibworkS has filled a gap in existing interventions for siblings of children with disabilities by enhancing access and providing a low-cost and virtual intervention.

  • Of importance, 7 research trainees have been involved throughout the project (1 undergraduate summer student with lived experience, 1 undergraduate thesis student, 1 undergraduate certificate trainee, 2 MScOT clinical trainees, 1 Ph.D., 1 postdoc fellow), each leading individual aspects of the work, as well as supporting the larger projects. This speaks to the interest in this work and MHRC’s goal of trainee next generation mental health researchers.

  • Ontario

  • Grant

  • University of Toronto

  • Holland Bloorview Kids Rehab, Kinark Child and Family Services

  • Knowledge Institute on Child and Youth Mental Health and Addictions

  • 2020-2021

  • Children and Youth Mental Health

  • Children (aged 1-12), Youth (aged 13-18), Family Members, Caregivers

About the Project

Siblings of children with disabilities often “suffer silently” with social, emotional and behavioral mental health problems as they are often overlooked by family members and caregivers. The aim of this project was to adapt a proven intervention for virtual care (called iSibworkS). iSibworkS is a 6-week online group intervention for siblings aged between 6 and 12 that aims to strengthen their self-esteem, express their feelings, develop problem solving and coping skills and maintain positive relationships with their siblings with disabilities and/or special needs.

Methodology

The project involved families, researchers, graduate students and clinicians to adapt the original SibworkS intervention for a virtual setting, forming iSibworkS. The researchers also created the foundations for two intervention extensions, iSibworkS-Jr and iSibworkS-Teen. iSibworkS is delivered virtually to children and youth participants over 6 weekly sessions. In these sessions, sibling participants met with peers, shared their experiences and struggles and developed problem-solving skills and coping mechanisms together through the intervention. Participants’ feedback was then collected through interviews and questionnaires, which helped improve the intervention.

Findings

  • iSibworkS was enjoyable and beneficial to sibling participants and their caregivers.

  • Siblings’ unique experience was purposefully considered by developing iSibworkS with families. Through iSibworkS, siblings were able to identify and describe their feelings, and gain experiences with problem solving to support their mental well-being. 

  • Sibling participants benefited from the group intervention, where they were able to improve their self-esteem, learn coping skills and share similar feelings and experiences through their found camaraderie with other siblings.

  • Analyses and subanalyses are still ongoing for work on the larger pilot and intervention extension work.

Project Outreach

The original SibworkS intervention was developed in Australia and was adapted for virtual delivery, forming iSibworkS, by the research team in Ontario. The original SibworkS intervention was scaled for delivery to other age groups forming iSibworkS-Jr and iSibworkS-Teen. Through dissemination of findings, this work will be shared nationally and internationally.

Resources Created

  • 3 publications (in preparation)

  • 6 presentations

  • Foundation for 3 iSibworkS interventions (for children and youth aged 6-8, 8-12 and 12-16)

  • Trainee-led project and environment

  • MHRC Spotlight on Research Webinar: